Quantcast

Synovial Sarcoma - Online Support Group

Future course of action


#1

Hello everyone!

I am 20 years of age and I had a synovial sarcoma on my right neck. It was around 5cms in size at the time of the surgery. I know synovial sarcomas on the neck are very rare so that adds to my ambiguity. I had a surgery for its excision last month and will be starting my radiation therapy this week. I also did a full body CT scan (PET CT) to see if it had spread elsewhere and it had not. I consulted a couple different doctors for different views and they all seem to suggest that radiation therapy would be enough. I am scared that by not performing Chemo I might be harming myself. Also I am experiencing some heaviness in breathing is it possible that it is due to lung metastatis? I've heard that name being thrown around a lot.


#2

Could the heavy breathing be related to the location of the surgery? Could be it be due to postsurgical inflammation partially obstructing the airways? For a lung metastasis to impact your breathing, it would have to be quite big... How long ago was your PET scan?


#3

I had the same question as Elodie...how long ago was your PET scan? Our doctors said the PET scan can detect tumors of about 5 mm and larger in most parts of the body (except brain and heart). Anything smaller than 5 mm is rather small and wouldn't impact your breathing, I wouldn't think. Perhaps, if the heaviness in breathing is not post surgical inflammation, it could be simple allergies or something like that. I know I have been freaking out a bit with our son over what would be normal stuff in any other kid, so I think it's totally normal to wonder if you should be worried about things. Let your doctors know about your concerns! They should be able to help. And best of luck to you!!!


#4

If your PET scan didn't show anything in your lungs you should be ok. My husbands cancer showed up 6 years after our first diagnosis and it's small spots in his lungs. Check into any medicines you might be taking that can be causing that feeling and have your heart checked. Start small, don't expose yourself to any more chemicals than you need to at this time. It is a slow growing cancer. My husband went through 2 different treatments of the most powerful chemo therapies only to have his come back. He is now on panzopanib and doing well. So don't panic, as long as you have regular appointments and can keep an eye on it you'll be doing good. If we had known when his cancer came back in his leg we would have just had the tumor

removed instead of amputation, and Boston Mass General has learned since then that complete amputations are not the answers for this type of cancer. That was 3 years ago and they have changed their opinions about that since then, so doctors are learning quickly about this cancer. So study up all you can. We actually approached his oncologist with the pansopanib which had just been approved by the FDA a month or so ago for this cancer. Just take your time and learn all your options.Good luck.


#5

Thank you so much everyone. My PET was conducted less than two weeks back so that is indeed reassuring. Thank youelodie and ms. Paula! I also think it is probably post surgical inflammation. I’m meeting my doctors on Monday and will definitely share these concerns with them.
Also thank you Limda for that information! I have been reading up a lot over the last few weeks and it seems like this type of cancer is uncommon but there is a lot of learning going on. I will keep in touch with the community on my progress!


#6

Great post Aashish!


#7

It is rare and seems to be inherited or genetic. But my husband's families all lived to ripe old ages excepy his dad who died of lung cancer due to heavy smoking in the military. If you can get a genetic test done it will give you and the mediczal community a better idea of where yours came from. Good luck.